A Study of 10 States Since Passage of the National Family Caregiver Support Program: Policies, Perceptions, and Program Development

Abstract

This study describes the preliminary experiences of 10 states in providing support services to family or informal caregivers of elderly adults and adults with disabilities; it focuses on the newly created National Family Caregiver Support Program, state general funds, Medicaid-waiver programs, and other state-funding streams. Case studies were conducted, between March and July 2002, through in-person interviews with state officials and stakeholders in Alabama, California, Florida, Hawaii, Indiana, Iowa, Maine, Pennsylvania, Texas, and Washington. States were in the start-up phase of implementing the National Family Caregiver Support Program and varied greatly in program design and integration of caregiver support into their home- and community-based care system. Viewing family caregivers as a client population was a paradigm shift for many state officials. Heavy reliance is currently placed on family and informal caregivers in home- and community-based care, without adequate support services. Family support should be an explicit goal of long-term-care system reform.